A mum who lost her five-month-old baby boy to a rare genetic disorder is hoping his lasting legacy will be to help other parents facing similar challenges.

East Anglian Daily Times: Midge, Rosie, and their son Rafferty who is holding Bryn.Midge, Rosie, and their son Rafferty who is holding Bryn. (Image: Archant)

Throughout her pregnancy, Rosie Dhoopun knew her baby was going to be born with complications, and days after she gave birth to Bryn, at Addenbrooke’s Hospital, it was discovered he had a life-limiting genetic disorder called Trisomy 18, known as Edwards Syndrome.

After the briefest of cuddles, Bryn was whisked away to the Special Baby Care Unit where he remained for the next 10 days before being transferred to Ipswich Hospital. He was finally able to be taken home after three weeks.

Medical staff told the family it was likely Bryn – who was born on November 22, 2012 – would not survive beyond a year, and after five-and-a-half months, he died suddenly in his mother’s arms on May 20 last year.

Since losing her son, Rosie has become determined that his legacy shall continue, and is now forming a charity in his name to help other parents who face similar battles.

She needs to raise £5,000 for Bryn’s Helping Hand to become an established charity.

Rosie, 40, who lives in Helmingham, said: “Bryn died at home in our arms – just very suddenly – one night he just stopped breathing and that was it.

“The hospice sent someone out immediately with a cold bed, which meant he could stay with us at home until his funeral.

“The first night he cuddled in my arms I couldn’t bear to put him down. Having him at home all this time was so very important – an important part of the letting go and grieving process.”

Having experienced this tragedy, Rosie decided she wanted to provide support for families who have babies or children with life-limiting or life-threatening conditions. The charity is aimed to be a support network, providing information about where to get the best help.

Rosie also wants to create neo-natal boxes, which would contain memory making items for families.

She added: “This charity means I can give back, or rather pay it forward, all the kindness and love and support other people have given us.

“I have got to keep Bryn’s memory alive and make his short life worth something.”

Losing Bryn is still incredibly raw for the family, including Rosie’s partner and Bryn’s dad Midge and his six-year-old brother Rafferty.

Rosie, who runs Nature&Nuture, a service for pregnant women and new mothers, added: “Bryn has come into our lives like a little whirlwind. He changed the way I view the world and other people. I have so much more compassion for others.”

The charity’s first major fundraiser is a Pregnancy, Birth and Baby Fair on Saturday, April 12, at the Martlesham Community Hall, Felixstowe Road, from 10am to 4pm.

There will be a range of stalls, plus demonstrations of activities like baby massage and pregnancy yoga, as well as refreshments.

For more information about the charity visit www.brynshelpinghand.co.uk